The road to truth is long, and lined the entire way with annoying bastards.
—Alexander Jablokov

Saturday, November 28, 2009

Day 36

I'm bone tired. I know I keep saying this, but really I am. I'm sorry I didn't post an update this morning, but my a$$ is dragging all over the place.

I spent the morning yesterday with Big Kid, and came home and fell into bed. I can't stop waking up at 2:30 or 3:00am, like I was doing when he was in the ICU. I try to go back to sleep, but it's hopeless. By 1 in the afternoon, I'm practically comatose.

When I woke up yesterday from my nap, Hubby and the guys had the tree up. It's always been our tradition to put the tree up the day after Thanksgiving, and then set a time over the weekend where we get together (moans from the teenagers and all) to decorate it.

When I woke up today from my nap, the boys had decorated it with all the care they could just to please me. I know they need the normalcy, but this was the first Christmas where I wasn't directing, and the first where Big Kid wasn't there complaining about the whole thing. gah. On one hand, I'm so touched that they took it in hand, on the other, I hate that the Big Kid isn't a part of it.He's going to hate it too.I know, I know, I'm being a big freaking crybaby.

I just want our life back, with everybody intact.

The good news is that the Kid is able to make about 4-6 steps on his own. Yesterday the physical therapist and he made two laps back and forth in the hallway with a walker. He said his "lungs were tired" and he had to go back to bed.

Today, when I got there early, he was seated in his chair and very proud that he had gotten there on his own. He was going to refuse a shower, but I talked him into one.

He didn't want to ride the wheelchair to the big therapy shower, so we got an extension on his oxygen hose, got a chair, and I helped scrub him down in the shower that was in the bathroom in his room.

The RT came in to look at his trach wound. He still has a big hole in his throat.

Then we settled down---all clean and shiny---and watched some of the "Dirty Jobs" marathon. ;-)

This afternoon, they took him off oxygen completely. He was really psyched, but he only lasted about 1 1/2 hours before his oxygen level went down to 75. It's just going to take some time.

He's trying hard. What I don't get is that there are no physical or occupational therapists to work with him on the weekends. Seriously, they just expect him to lie in bed and do whatever over the weekends and holidays.

This is advertised as a "care hospital". Healing doesn't take weekends off. Why don't they have people there 7 days a week to do this stuff? Big Kid was restless, so I got permission and went and got hand weights from the "gym".

I know you are craving the old normal life. But Big kid will be home soon, and life will be back to normal. Something good has to have come from this nightmare you have been through. Hang in there and hugs and prayers to you.

You've got alot to come down from, the sleep thing will straighten itself out when all the mess in your system levels. I don't get the weekend-no-therapy-thing either. The patients are supposed to go into stasis or something? Well, at least this coming week will be a full 5 days, and you'll see some terrific improvements then!

Your life has been in a constant state of crisis and in stress mode for so long, it will take it a while to get back into your normal sleeping routine. I'm just glad you are taking naps when you can and taking care of yourself.

The Christmas tree being put up, must have been bittersweet. You know they meant well, and it was so kind, but I hear you about traditions and two important people not being there. I think without Big Kid there, it might have been overwhelming painful for you. What sweet boys you have.

I'm thrilled with the progress Big Kid is making, and I know it is only going to get better. When you look at the big picture, and how far he has come, it really is a true blessing and close to a miracle. I'm so happy for you and Big Kid and will continue to keep you in my prayers and close to my heart.

Attila, I've been a lurker for a good year or so - love your writing style.

Anyway, I'm an Occupational Therapist by profession. In my 20-year career, I've worked on a Psych unit of a hospital, a nursing home, an outpatient place and for various Home Health companies in 2 states. Except for the Psych unit (where billing was all-encompassing...you don't pay separately for the therapists, the meds, the doctor visiting your room for 30 seconds,etc.), NO ONE offered therapy 7 days a week - my first guess is that insurance is only willing to pay for up to 5 days a week. Some places do offer therapy on weekends, but if you get it on Saturday and again on Sunday, you may not get it on Tuesday and Thursday of the following week, to keep within that "5 visits" zone.

Or...check Big Kid's medical insurance - depending on who he uses, they may only pay for X number of therapy visits per year. If that's the case, then they may be trying to stretch his therapy visits out so they can work with him more over the long term...as he gets stronger and stronger. If he's allowed 20 visits, 5 days a week of therapy will get him 4 weeks, whereas 7 days a week will get him only 3 weeks...and he may not be fully "ready" at 3 weeks (I picked numbers out of the air, BTW. Your mileage/insurance policy may vary).

Whatever the reason, Big Kid or you could ask the OT and PT for "homework" for him to do during the days he's not getting therapy. It'll be relatively easy exercises (god forbid he hurt himself doing their exercises and you try to sue them) but it'll be better than nothing.

FWIW, if you want to kick up a dust cloud, you could consider asking the Rehab Manager why there is no therapy on weekends. "We don't have therapists who work on weekends" and "We want to give the patients time to rest" are not adequate answers, BTW. Therapists will work whatever hours they are told they need to work, if they want to keep their job (they may not like it - I've done my share of weekends AND evenings...didn't like it, but it was integrated as part of the job description, so...). And patients get plenty of time to rest between the few hours of therapy they get every day. So see what they say.

Obviously, I don't know what the exact reason is...but there are some suggestions of what it could be. Hope that helps.

Such kind and wise words from those who commented before me :-) You, too have to heal. The sleep disturbances and all of that will get better in time. There was a man named Piet Hein who has a member of the Danish underground during WWII. He wrote _Grooks_ One that comes to mind is this one: Put up in a place Where it's easy to see. That cryptic admonishment, TTT.

When you feel How depressingly Slowly things climb It's well to remember That Things. Take. Time.

Wow, great info from Littlebit above. Amazing that there is always a blogger who knows a lot about the things we ask. So nice that they put the Christmas tree up, but I understand your bittersweet feelings about it. Wishing you a week of much progress for BK.

After 37-days of having had your life in total upheaval, you’ve entitled to want a modicum of predictability restored. However, like Beth stated, your family is going to have to adapt to a new normal after what you’ve experienced.

Your guys were very thoughtful for putting up the Holiday Tree…maybe they’ll let you have the honors of taking it apart!

Patience is going to become your mantra while Big Kid regains his strength. It’s going to take time, but he’ll get there eventually.

I can understand help not being around on a holiday weekend but if it's a healing hospital, then there should be people there to assist with physical therapy on weekends. Have you spoken to someone about it?

I'm glad that things are still progressing. Things will get back to normal soon. Sending you BIG hugs!! xo